Sunday, August 11, 2013

Dr. Appointment: New Treatment and Some General Life Musings

This past Wednesday I had an appointment with my "B Team" ME/CFS specialist, Dr. W. Usually I don't even blog about my appointments with him anymore because they've settled into a routine where we simply check my labs and renew prescriptions as necessary. But this time we added a new high-risk, high-reward treatment.

I told Dr. W that most of my symptoms have shown improvements, although slight, over the past six months, except one. Brain fog. I used to get brain fog only rarely. When it hit, it was utterly crushing. It would prevent me from doing anything but sitting around feeling sorry for myself. (I wrote about how bad my brain fog would get in this post from February.)

Over the last six months, the situation has gradually changed. I don't think I have had even a single episode of crushing brain fog since that February post. In its place, I have been gradually getting more and more frequent episodes of a more subtle brain fog--a much more mild version where I am still mostly functional. As of recently, I would estimate the brain fog is there about 1/3 to 1/2 of the time. It makes me wonder if I'm even dealing with the same type of "brain fog" as before. Maybe this new version is caused by something completely different altogether.

I asked Dr. W about a treatment called Vyvanse, which was brought to my attention by my friend Bret, who I know through this blog, and more recently, some other patients. Vyvanse was developed as an ADHD drug, and is one of the newer drugs for that purpose in the same class as older drugs like Ritalin and Adderall.

Dr. W stated that he didn't have enough experience with Vyvanse to feel comfortable prescribing it, and besides, most insurance companies don't cover it for off label uses yet. Instead, he recommended Vyvanse's cousin Adderall. I was receptive to the idea of Adderall on an as-needed basis for brain fog because I've seen a number of other PWME's post about their positive experiences with it. So he decided to start me with Adderall and said that he would look more into Vyvanse in the mean time.

Now, here's the serious rub: Adderall can be habit forming, especially when taken every day. We had a frank discussion about ways to avoid addiction. My goal is to use it in small doses (much smaller than would be given for ADHD) and only as needed when my brain fog is particularly bad. To help force me to pace my dosing, he prescribed me only a two month supply with no refills. My next appointment isn't for 5 months.

On Friday, I tried my first dose - a tiny crumb from one of the tablets. I believe there was a definite improvement of mental clarity, which lasted for about 4 or 5 hours. Even after it wore off, it seemed that my brain fog was gone for the rest of the day. I haven't tried it again since, but that initial test was promising. At the same time, I know I have to be careful with this drug. I will update as necessary...

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I had a particularly good week health-wise with no major crash days and decent functionality. And so I feel like I'm in a good place, mentally, right now. I understand this is easy for someone like me who's only moderately ill to say. But in my present state, I feel like I can carve out a happy life for myself even if I never improve any further. Of course, I always feel like that when I'm on a hot streak. If I crash tomorrow, I'll feel much differently.

1 comment:

Hey Patrick, good to see you have a doctor with an open mind to try this under supervision. I did take adderall for about 5 months before switching over to Vyvanse, 10-15 mg 5 days/wk. My reason for switching was that vyvanse has a low risk of addiction, and seems to last a bit longer. Again, I think it is important to not take everyday, which is why I take Thursdays and Sundays off. As I have stated to you before, I feel that this medication is mainly responsible for me being able to work FT and have a bit of a social life. I too have brain fog as a hallmark symptom which this helps a lot. Trying to be creative and energetic when in a heavy fog is the worst, almost as bad as the fatigue. My saline IV got pushed back to this thursday as my doc was ill last week (even docs get sick every so often), so I will let you know then on that treatment. I really hope you see some continued benefits from adderall Patrick. Qualify of life is worth something....

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DISCLAIMER: I am not a doctor and have no medical training. Nothing in this blog should be construed as medical advice. This blog simply recounts my personal experiences and, at times, summarizes research from other sources. I can't verify the accuracy of these other sources. Never rely on anything you read here in making your own medical decisions. Always consult a doctor.

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What is Myalgic Encephalomyelitis (ME)?

The clinical definition of ME is complicated, and the symptoms are many. It is a "multi-system disorder" that affects a person's immune system, hormones, nervous system, and energy (at the cellular level). I prefer to explain, simply, that it feels like I have the flu. Every single day. This is an oversimplification, but it's often the best way to explain it to a healthy person.

About Me

I came down with ME in June, 2011. I was diagnosed six months later. This blog tracks my progress; my successes and failures along the path to (hopefully) sustained remission.
I live with my wife and two young daughters in Southern California.